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Author Topic: My legs !My legs ! I am so frustrated !!!  (Read 3977 times)

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Offline panda

  • Member
  • Posts: 224
My legs !My legs ! I am so frustrated !!!
« on: March 09, 2007, 04:29:35 AM »
Hi there, I come to this point that  I feel like eerything is closing on me.. no matter what I wear i look horrible as my skinny legs are so... and so far there is no hope... my dr. tells me I can not quit with the drugs since when I first started I was 0 cd for and there is a huge chance that if i'll stop i'll drop back to 0 even that i am with undetactable for over 4 years, and i want to stop with the drugs so bad... what am i suppose to do? what hope is there for me? what about the growth hormone is it helping anyone and I mean for female... I feel so sad , this is so hard ...

Offline Central79

  • Member
  • Posts: 527
Re: My legs !My legs ! I am so frustrated !!!
« Reply #1 on: March 09, 2007, 05:46:39 AM »
Dear Panda

I'm really sorry you're going through this. It's a horrible side effect.

I guess the most constructive path to pursue with your doctor is one of negotiation. What drugs are you currently taking? Is there a more fat-friendly drug regime you could be on?

I don't think you should consider stopping meds, but if they're keeping you on AZT or d4T just because you've had a good virological response then that's wrong. There may be another regime, just as effective at stopping HIV, but that will allow you to (slowly) regain some fat in your limbs.

All the best.

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline panda

  • Member
  • Posts: 224
Re: My legs !My legs ! I am so frustrated !!!
« Reply #2 on: March 09, 2007, 09:08:25 AM »
hi , i am now taking kaletra + videx250mg+viread, i am on the cocktail for approximately 10 years started with croxivan who started this whole mess...from that pojnt everything went worst and worst.. i was on zerit + videx combination for pretty long time - can u imagine??? i quit with the zerit and switched to viread around 3 years ago, i hoped that things will go better but it didn't i know it sometimes takes years but so far 3 years past sine i left the zerit and nothing, so anyway why i am taking this combiantion  now is a long story involved with resistance to many drugs and st. johnson i managed to survived. this is what i take now. believe me me and my dr. checked but there is nothing i can do to change this current combination now. but how can it be there is no cure for this horrible side effect ?i mean all these doctors work on it can't find something to revise this situation? what about the gh or uridine, did anyone tried it ?

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: My legs !My legs ! I am so frustrated !!!
« Reply #3 on: March 12, 2007, 12:18:55 PM »
I wanted to empathise regarding your frustration with living with HIV and having to deal with issues that seem beyond our ability to address.

So I will tell you what I understand, not being an expert, and not knowing specifically about wasting effects from zerit and the like.

Loss of fat in certain parts of the body are well documented side effects particularly with certain classes of antiretroviral. Apparently Zerit, which is a potent drug against HIV, is frequently associated with complaints about LIPO issues. Not that others drug classes do not have this problem, it seems particularly severe with Zerit.

I have attached a guideline for treatment from thebody.com

How Is Lipodystrophy Treated?
 There are currently no clearly effective treatments for lipodystrophy. However, if you have lipodystrophy, you may benefit from:

       Changes in your anti-HIV medications -- People with lipodystrophy may benefit from changes to their HIV treatment regimens. If you are taking Zerit, switching to Ziagen (abacavir, ABC) may help reduce lipodystrophy. PIs may be replaced with non-nucleoside reverse transcriptase inhibitors (NNRTIs), which are not associated with lipodystrophy. However, the results of switching drugs are uncertain; you and your doctor may decide that changing medications is not right for you. Be sure to talk with your doctor before stopping or switching any medications.
       Diet and exercise -- Changes to your diet and exercise regimen may help build muscle and reduce fat accumulation.
       Medications -- If you have insulin resistance and are hyperglycemic (see Hyperglycemia Fact Sheet), the drug Glucophage (metformin) may help decrease abdominal fat.
       Injections, implants, and surgery -- If you have fat wasting, you may benefit from injections of human growth hormone (hGH) to boost muscle size in your arms and legs. Injections of fat or synthetic fat substitutes like Sculptra can fill out sunken cheeks, as can cosmetic cheek implants. However, most of these treatments, along with surgery to remove fat accumulation, are still being studied and do not yet have FDA approval for the treatment of HIV-related lipodystrophy. Sculptra is the only treatment that is currently approved; it received FDA approval in August 2004.

----------

I don't know how badly your legs have wasted, but would you be able to start a resistence training program for your legs? There is alot of science around building muscle mass. Which includes the use of steroids. Be very careful here, while it may be appealing, i hear both wonderful and horrible things about steroids. First thing is to check your testosterone to see if you have enough to support your own training program. This can be problematic. Testosterone helps you grown muscle. If you are deficient, you may not get the results you are looking for in a training program.

Not knowing what your current state of fitness is, or if you feel well enough to do this type of activity, you may need to start very slowly to build up. I know it is hard.

There is a forum from a person who went to 0 cd4 and his legs basically turned to mush. He now can ride century bike rides. (100 Miles), at a time. He takes it easy cause he doesn't want to overdo it, but he was able to turn his life around from drug addiction and 0 CD4 to someone who can ride a bike for several hours it takes to ride a 100 miles. (About 6 hours on a bike.)

--------

Additionally, you may need to look at your supplementation to see if you are getting the nutrients you need to help your cellular function. I put some posts on the Nutrition side so you can see what folks are purchasing from Newyorkbuyersclub.

The big antioxidants, alpha lopaic acid, nac and acetyl-l-carnintine with a specific multi for us poz folks may give you the energy you need to help you get into a program.

I wish you nothing but the best and you are not alone.






 
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline panda

  • Member
  • Posts: 224
Re: My legs !My legs ! I am so frustrated !!!
« Reply #4 on: March 12, 2007, 06:47:35 PM »
Dear Risred1 , thanks a lot for your rpely ... yes, my situation right now is horrible and as mentioend before there is no other alternative for me rght now rather the the current combination I take.
I did tried weights training for a while but this frustration took part on every single though and so I quit. I am vegiterian as well and i am trying to catch up with the doses of protein I need but i thinnk its now enough.. that is why i thought about the serostim, growth hormone or what ever it is called. also i herd of this l-carnitine and i am trying to understsnd if i can buy it without a prescrition and at what doses it is recomended, is it ok for woman who is trying to get pregnent?
Is serostims/GH can be given for a woman as well? it is so hard fr me, i leave in israel and the information here is limited.

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: My legs !My legs ! I am so frustrated !!!
« Reply #5 on: March 12, 2007, 10:48:08 PM »
All I can say is in life we want lots of things, but we need to focus on what we need.

1) If your source of information is limited in Israel, you should be utilizing the following links for information.

thebody.com - this is an excellent site where you can search for similar questions that have been answered by doctors, as well as post questions to doctors.

newyorkbuyersclub.org - site for information about supplements

poz.com - lifestyle, news

http://www.jonkaiser.com/ - a specialist who published a book called healing HIV who focuses on nutrition and general health issues and supplementation to manage HIV.

2) Supplements are regulated differently in different countries. However, if it is on the over the counter market in the US, I would believe that you could source this substance in Israel or in Europe at least. You may also be able to have them shipped internationally, however, some of these materials really should be refrigerated. I would suspect that with Israel being a modern country, you would be able to source these supps from a aids or hiv organization in Tel Aviv perhaps?If not, your going to have to get them in Europe.

3) So you are a vegetarian, How much protein are you getting, really? HIV people need protein, so you really should look to supplement with whey protein powder. (this is a dairy product, I hope this fits with your vegetarian lifestyle.) This will help you cover any shortages in protein in a concentrated does that you can put in milk. Get the plain Whey Protein that is not hydrologized if possible. since Weightlifters use this stuff, you should be able to get it at a Sporting goods distributor that supplies sport supplements.

4) It is unfortunate that you were defeated by your thoughts when you started training. You need to keep trying. If you are having issues with depression, you should seek council.


risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

 


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